Cure is not enough! Why it is time to act and close the gap Survivors speaking up

摘要

Purpose Good news: Survival rates in childhood cancer have increased from 20% up to over 80% in Europe, depending on cancer type and country. Not so good news: This great success comes with the price that up to 60 to 70% of childhood cancer survivors suffer from cancer- and treatment-related long-term effects that need life-long follow-up care. Bad news: transition from paediatric health care to adult health care still poses a great problem for childhood cancer survivors due to the lack of adequate long-term care structures for adult survivors of childhood cancer. Patients and methods Ongoing initiatives and projects driven forward jointly by survivors, parents and health care professionals tackle this gap: Childhood Cancer International Europe (CCI-E) and its Survivors Network (CCI-ESN), the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer (PanCare) and the European Society for Paediatric Oncology (SIOP Europe) are working on and advocating for better long-term follow-up care structures across Europe. Results Three ongoing best practice projects are presented-each reflecting one important element in the delivery and provision of comprehensive long-term follow-up care: The PanCareFollowUp Project, the Survivorship-Passport and the ZONE-project. Conclusion The Childhood Cancer International Europe Survivors Network call for action: We need the support of politicians and our health care systems to make sure that every single survivor gets the long-term care that they need. So #RaiseYour-Hands4Survivors and help us close the gap!